Josh (left) with his twin brother, Zach (right)
Josh had double transplant surgery – liver and lungs – in December of 2018. He was 35 years old at the time and had lived with cystic fibrosis (CF) for a lifetime. Growing up, Josh and his identical twin brother, Zach, also diagnosed with CF at a young age, had traveled many times with their family from Decatur, Illinois, to St. Louis for assessment and treatment at St. Louis Children’s Hospital and then, as adults, at Barnes-Jewish Hospital.
When the boys were young men, the Transplant Center at Washington University and Barnes-Jewish Hospital evaluated Josh and Zach and approved both for placement on the liver transplant list, though at the time neither of them had a MELD score that indicated they were sick enough to rise to the top of the list.
In 2001, Josh began treatment for liver disease with Jeffrey Crippin, MD, Washington University hepatologist and medical director of the Transplant Center. Crippen notes that “about 30% of patients with CF develop scar tissue and cirrhosis in the liver.” Josh was one was of those people.
Though his health was certainly compromised, Josh had been pursuing his interest in theater, acting in a number of productions in his hometown. Gradually, he lost the lung capacity to take on singing roles but continued to perform, accepting smaller roles with fewer lines to accommodate his breathing difficulties. In 2017, at the end of one performance, Josh remembers riding home in the car with his brother and finding it hard to take any breath at all. He was admitted to an ICU in the local hospital and diagnosed with pneumonia, which proved difficult to treat. Josh was then transferred to Barnes-Jewish Hospital.
Crippin notes that Josh, now at a critical point in the course of CF, was essentially debilitated by his failing lungs and liver. And he adds that, not long ago, Josh’s condition would have presented a conundrum: Would it make sense to transplant healthy lungs into a person with a failing liver or, conversely, a liver into a person with failing lungs? At Barnes-Jewish Hospital, it wasn’t an either-or situation for Josh. The Transplant Center has the expertise to offer a combination transplant – liver and lung –performed in separate back-to-back surgeries.
Though Josh had been on the liver transplant wait list for some time, he was also placed on the wait list for lung transplant. And because he was so sick, his MELD score moved him to the top of both lists.
Daniel Kreisel, MD, PhD, Washington University cardiothoracic surgeon and surgical director of the lung transplantation program at the Transplant Center, performed Josh’s lung transplant. Surgeon Adeel Khan, MD, MPH, also a member of the Transplant Center team, undertook Josh’s liver transplant. “We’re blessed with incredibly skilled surgeons,” Crippin says, “who worked together to make this happen.” In total, the procedures took approximately 12 hours to complete.
After recovery in the hospital, Josh moved to Mid-America Transplant Family House in St. Louis, where he began pulmonary rehabilitation work. During recovery, Josh experienced some setbacks, but his persistence in rehab, as he worked to regain the strength he lost during chronic illness, has brought rewards. Josh has returned to Decatur, his family and the dog he missed during his months of illness and recovery. And he has been testing his voice, ready to discover what notes he can hit and hold.